leadmeastray88

healing thoughts being sent your way leadmeastray!

i'm sorry you're in so much pain, i remember those days all too well.

i agree with Ursa Major, i would go in person and ask for your results if you really want them. they can not withhold the results of a medical test from you (if you're in the US)...

or, another idea is to call in as an emergency to your surgeon or to go to your primary care as an emergency appointment. i've done the latter many times (mainly because i don't like going to my GI) and she acts as an intermediary - but i have a good relationship with her, i don't know your situation.

Thanks very much

I think I will go in and ask for my test results. You're right, they can't deny me that right.

I don't think calling in to my surgeon as an emergency is an option - as my reasoning is not considered an 'emergency' by their standards. That is why my appointment got bumped. He has been a very good surgeon to me - I don't want to ruin our good relationship. He's the one who cured my hernia problem.

My primary care physician won't give me my results - I called her this morning and she said that I have to get them from my surgeon because he's the one who ordered the tests.

When I got really sick, I was tested for parasites, too. Everything was negative. When I eliminated gluten, the D that I had for six months straight without letting up went away the next day!

And I did a parasite cleanse on my own recently, and there must have been millions of parasites coming out over the course of the 30 days. So much for not having any parasites.

Wow, are you serious???

That is crazy...and here I thought I was going to get answers on Monday. I guess I shouldn't be too disappointed.

What did you use for your own personal cleanse?

Sorry about the venting but I have nowhere else to go...

My surgeon decided to stool test me for parasites and (something else antibiotic related, can't remember what it's called) starting last Monday, the 9th, and see what the results for that are before sending me for scopes.

I had a rough week this week, lots of bad cramping and abdominal pain and fatigue and all that kept me going was telling myself "It's okay, you'll see him on Monday (the 23rd) and you'll find out what's next"

So the receptionist calls me yesterday and tells me they have to bump my appointment to July 7th because someone overbooked him. "He has to take care of emergencies first".

My beef with that is my test results will be in on the 23rd yet I have to sit back for another 2 weeks to wait.

I called back and asked if I could just go and see my regular doctor to get the reuslts so I could have some peace of mind. The answer was no.

I understand that surgeons have to deal with emergencies first, I guess I'm just frustrated that my constant abdominal pain and suffering isn't enough of an 'emergency' and they make me tough it out for another 2 weeks while the results are sitting on a computer screen waiting to be read.

Again, sorry for the vent. Just needed to tell somebody.

Kim

i'm from canada! ontario

I'm from Canada as well...Winnipeg!

Headaches, cramps, etc. can be from lack of magnesium, calcium, zinc and other minerals. This can be from just not having enough in your diet, to not being able to absorb enough from your food due to celiac malabsorption.

Hi, thanks for your concern!

My doctor did an enormous blood panel on me to check my minerals and vitamins, including all of those you mentioned above. Vitamin B12 was the only one I was deficient in. I am taking supplements right now, however I will most likely start shots instead.

I know this is not from my diet as I am an extremely healthy eater. This is most definitely not caused by my diet.

I am in the process of being tested for parasites, and if those tests come back negative then I will be scheduled for a scope. Right after the scope takes place, I am going to try the diet no matter what the outcome is.

Thanks again for your concern!

Hello fellow Canadians

I'm from Winnipeg! Any other 'Peggers out there?

I had a tapeworm and roundworms .... they did NOT show up in testing! Stool testing does not show all parasites, but it is a valuable things to do.

I found the tapeworm/roundworms when I started taking Humaworm (www.humaworm.com) for the bacterial overgrowth that was discovered in the parasite testing.

I felt SIGNIFICANTLY better when I got rid of the parasites.

If your body was healthy, the parasites would not want to be there. I consider them to be a symptom that you are unbalanced, or are good terrain for them. So, you might have them, might feel better getting rid of them, but still need to fix the circumstances that caused them to want to live there.

So then if I have a gluten allergy (that is poisoning my body because I have to keep eating it) , is that enough for me to be a host?

So I saw my surgeon yesterday hoping to get a date for an endoscopy.

He thinks that we should screen for parasites through stool testing first, before we start talking scopes.

Did anyone else get tested for parasites too?

I read in an article on the web that parasites can be caused by food allergies - so can having a gluten allergy/intolerance cause parasites?

Just curious...

Thank you , much appreciated!

I've done web research but every site tells you something different and it's not like getting information straight up from people who have had it done...

Anyway, thanks again

I just hope its not Celiacs but if it is i have no choice but to deal with it

How come you hope it's not Celiac's?

I mean of course nobody wants to have it...I can understand because most of us here are going through the same thing, but in my opinion I would much rather have something that I can fix with my diet than something I have to fix with medication. Just a thought, and a look on the bright side I guess

I hope you can fix your ailments soon!

So I am anxiously waiting to get a date to go in for an endoscopy...

and I am absolutely terrified of it!!

It's not the needles part, (if there even is any) I have had many surgeries before. I am completely fine with that.

It's more the 'tube going down the throat' thing I'm having trouble dealing with.

Can anyone who has had one answer some questions for me?:

1) Did they give you some sort of anesthetic / tranquilizer to make you more comfortable?

2) Do you remember any of it?

3) If you did remember it, was it traumatizing?

Or can you kind of run through the procedure quickly with me?

I've had one bad experience with surgery and since then it's been kind of freaking me out a little

I would appreciate any input at all! Thanks!

I'm new here too, and I am also in the process of getting diagnosed (hopefully)

My suggestion would be to go to a GP to run some bloodwork and see what that shows. However, these blood tests are not very reliable! So in the meantime, you should also find a GI to do the endoscopy because it can take months to get in.

And yes, you have to be actively eating gluten for a minimun of 4 weeks according to my doctor, with the equivalent of 4-6 slices of bread a day.

There are also some people here who have been diagnosed through Enterolab, you should definitely check out that site. They take stool samples instead: www.enterolab.com

Like I said I'm also learning the ropes, and so far this site has been nothing short of helpful and supportive.

I hope you get a diagnosis soon!

-Kim

Thanks for your replies, this is great help!

Okay so everyone knows that with the enhanced security at airports now we can't take our own food on.

And when flying overseas (9+ hours) every year like I do, I'm bound to get hungry And these days on the planes they only offer sandwiches as their meals (here on Canadian airlines anyway), and even if there were hot meals who knows whats in those.

So, does anyone know if have they passed a law to let people with food allergies take their own food on planes?

Any help is greatly appreciated!!

Hi,

Does anyone else have vitamin B12 deficiency caused by malabsorption?

I'm not anemic in anything else as far as I know, like iron and such.

Thanks!

Yes, and I can raise you one. Yesterday I was at a family function and cheated a little bit on my gluten-free diet (homemade Jamaican Patties and a McDonald's soft ice cream cone while waiting for the train). A couple of days before I also had some cheese. This is about to get very explicit in terms of female symptoms, so people should stop reading if they don't want to know:

I get the menstrual-like cramps (slightly different than the other painful abdominal cramps, which I also get), and I get a fatty, gooey, vaginal discharge that is similar to the fatty slime that is excreted with bowel movements while on wheat and dairy regularly. I also feel the menstrual-type cramps when I need to urinate, until the offending matter passes out of my system. I get some weird vaginal pain as well. So yes, I just went through it. I noticed a similar pattern of symptoms with accidental glutenings, and from my past illness before gluten-free.

Wow, I get that too!! I never thought of that...

How about vaginal itching?

Thank you SO much!

Great, thanks guys!

This is my major symptom so I'm glad that other have had the same one.

Hi everyone,

I was just curious to see if anyone else has had this symptom.

Throughout the month (not during 'that time') I have cramps in my lower abdomen that are in the same region as menstrual cramps but don't feel like them, much more subdued and they don't throb like menstrual cramps do.

Wondering if this could be added to my list of symptoms?

Bear in mind also that gluten for many of us is a neurotoxin, so you may feel a bit more moody when you first stop consuming. This will pass.

Be sure to read as much as you can here, the diet is tricky at first because there are so many things to consider other than just food. When you first go gluten-free it is a good idea to try to go with whole unprocessed foods and do drop dairy in the beginning. It will help speed healing and you can add it back in after you are feeling good again. Many of us will have problems with dairy that go away after we heal but some of us do have a milk protein intolerance also and that can confuse things if we go gluten free but still consume dairy.

That's great advice, I never even considered something like that!

So other than the basic dairy products, what kinds of foods contain milk protein/ have milk derivatives?

Yes you should be skeptical. Up to 30% or celiacs will show up negative on blood work. If I had relied on blood work I would be dead now. I had countless panels done with negative results but within a short time of eliminating gluten many of my problems were history or at the minimum in remission. Those were not minor issues as you can see by my signature. After you are done with all the testing you desire to do make sure no matter what the results that you give the diet a good strict try for at least a few months.

Wow, that is definitely reassuring

I think no matter which way my tests go I am going to try the diet anyway and just see how I feel. Then I'll know. Even if I don't have a proper dx if it makes me feel better I'm willing to do anything at this point. I feel like I'm slowly getting more and more depressed and frustrated because I don't know what's wrong.

Thank you all for your support, it's much appreciated!

There are some people here who had negative blood work and a positive biopsy. But it is true that if you started the gluten-free diet prior to the blood test, then you are even more likely to get a false negative.

If you still think you have celiac disease (which is a definite possibility) you could have an endoscopy with biopsy. If that comes back negative (if you do it) you can try the gluten-free diet. There are plenty of people here who are on the diet who either never had testing or had negative testing, but know they are gluten intolerant because of the amazing difference on the gluten-free diet.

I have never had any testing done, but I will get an awful reaction if I eat gluten, so I don't.

Thanks fo the great info

It's nice to have some support, because I've had many health issues the past few years and I've been from doctor to doctor telling me that things are in my head when they really aren't...and then they put their foot in their mouth after they've been proven wrong.

I just want to know what is wrong with me, that's all. At this point, I'm indifferent to what it is, I just want to know.

You said you suspected celiac, had you modified your diet prior to the test? Most medical tests for celiac are testing for a reaction to gluten or damage caused by gluten. If you were off gluten prior to your test you have even more reason to be skeptical.

No, I have not modified my diet at all. I have been eating as normally as possible, although I find it hard to because I always feels nauseous after I eat.

I have also noticed that I have dropped 6 pounds since December. :S

I've been suspicious that I have Celiac's for a few months now. Here are my symptoms:

-lower abdominal cramping

-extreme fatigue

-nausea (especially after eating, and when I wake up)

-bloating

-irregular bowels

I am also vitamin B deficient, I don't know if that is related or not.

I had a blood test a few weeks ago and i got the results today - they were negative.

Did anyone else have the same symptoms and had a negative blood test but positive biopsy? I'd love some reassurance

Thanks in advance!